Discussion in 'General ME/CFS Discussion' started by Tom Kindlon, Sep 13, 2016.
I thought I would start a thread on this. It might be interesting to collate experiences.
Here's one somebody posted on Facebook last week:
Critical Illness - A Dreadful Experience with Scottish Provident
Somebody sent me this which they saw on Facebook on Tuesday:
Though I was so sick I couldnt even remain seated at an appointment and was hence having to lay on floor so not to pass out completely, I had trouble getting onto a disability pension (though I had doctors backing me for it). I ended up having to appeal the disability pension knock backs on a further two occassions. My case ended up having to be appealled at the very top level in Australia's capital city Canberra (when Im in Sth Australia, so it ended up having to be heard in another state).
The reason why I got knocked back on one of those occassions was due to "not undergoing treatments" .. I assume from that they meant not undergoing GET/CBT/rehab. seeing my ME/CFS specialist did have me on a lot of supplements and so I was having that treatment but just not any GET or CBT.
When I finally did get it, the assessor was horrified I hadnt been given it the first time due to how severe I was (I couldnt even stay awake all day and had nearly 90 symptoms).
I've just recently been told by a doctor that I needed to try some other treatments before even bothering to apply, as they don't accept supplements as a real treatment. She never told me what those treatments were that I should be trying, but she did try to get me to do GET. It's frustrating, as it's never been claimed as a viable treatment for severe CFS but all the organisations withhold assistance if you don't get it. I kept trying to say to my doctor that I can't even manage daily life, how can I manage GET, but she just said you just increase things gradually, like instead of just walking to your mailbox, walk another few metres each time. I didn't think to say at the time, but really.... I do that every day. Every day, we fight to get through each day, therefore we are ALREADY pushing a little bit extra each day. It's just that, you know, it doesn't fix us like it's supposed to lol
I received this email about CBT/GET today...
That sounds like wonderful progress. It might take a while to filter through the worldwide community, but hopefully this plus the PACE trial being revealed will assist in giving us a better future.
has this letter got its own thread yet? It should have as its so important
edit. Ive made a thread for this http://forums.phoenixrising.me/index.php?threads/cbt-and-get-being-downgraded.46884/
Somebody send me this for the thread.
Remem when uk gp docs were getting £50 a pop for dx'ng depression?
i bet docs are getting a kickback for this too.
after all it will be the same psych lobby selling the product.
Just happened to be looking at some older posts on this, and thought that I'd re-post them here.
Posted on MEA Facebook page:
Also, I'd made this post about a doctor promoting the recovery claims in the Lancet commentary who turned out to be involved with the insurance industry and had a lot of negative reviews from patients claiming he'd wrongly dismissed their health problems: http://forums.phoenixrising.me/inde...pace-trial-protocol.3928/page-121#post-466969
Since then he's attracted more negative reviews: https://www.ratemds.com/doctor-ratings/3207779/Dr-Richard-Marlin-Burlington-ON.html
I also found him discussing CFS 'rehabilitation' in this insurance company document: http://www.rgare.com/SiteCollectionDocuments/GroupRe/5088944.pdf
From what I can see this is the normal experience. This notion it starts with us avoiding activity is nonsense for the majority of us, and maybe nearly all of us. Insurance companies and other organizations need to wake up that they are just creating more and more severely sick people, which may cost them much more in the long run.
You can also try a Google Site Search
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